Husband doesn't understand fibro. - Fibromyalgia Acti...

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Husband doesn't understand fibro.


When I first found out I had fibro about twenty five years ago I. gave all the info to my husband to read thinking it would help him to see what and how I felt. He didn't bother reading it so to this day he thinks that if I have a five minute rest I will be better. I get no help from him at all. Because he has diabetes and various other things wrong with him, it has to be all about him. If I say I have pain in my hip he's had it as well. He even told me that I should go on a course to learn about diabetes. So as you can imagine I feel completely alone with no one to care how I am feeling. If I stay in bed for a while in the morning because I ache I am being lazy.

This is my first post here hope I've done it correctly.

My thanks to all who have posted as I found them so informative and some very sad.

Lots of hugs to all.

31 Replies

I'm not a violent person but this makes me cross, my Husband had a stroke, he has recovered to a degree and we trundle along together as best we can, I think he needs a serious talking to you need to be able to work together, tell him it isn't a contest as to who feels worse it has to work both ways. There are others on this forum who are also in a similar position who will come along with better advice than I can give as there is help out there. We work as a team albeit a very slow one. I am sorry I can't be of more help or if I've spoken out of turn. Just wanted you to know you are not alone. Lou xx

Xaixai29 in reply to lou60

Hi lou60

He does need a talking to but he's the sort of person that is always right and whatever you say he has an answer for. Very arrogant and self centred more so since he's got older. Are there other men like him or am I just unfortunate?

Hugs to you. xx

maawasam in reply to Xaixai29

Mine is exactly like him.

ShellyWelly in reply to Xaixai29

I would say you are just unfortunate.

I wouldn't waste a second of my time with someone who didn't deserve it - arrogance and being self centered are not personality traits I look for in a man! If mine started turning that way and didn't change the negativity, he'd be gone.

You shouldn't put up with that kind of attitude and lack of support - it eats away at your self esteem and happiness. Your partner should be your best friend. Differences are inevitable and it's not all happiness and roses all the time, but wow, I wouldn't put up with anyone with such an uncraing, unsupportive bad attitude, age is simply no excuse imo!

I know individual circumstances are difficult and complicated, but no one should ever stay in an abusive relationship out of fear of the unknown or fear of being alone. It takes a lot to do it, but i'd rather live out my days single and happy. I should add i'm a divorcee.

*hugs* for you, I wish you were being treated with the kindness and love we all deserve xx

Gentle hugs. Sounds a bit like my hubby. If my cat is black, his is blacker. Though he is a lot more understanding than your husband appears to be.

Gentle hugs


Xaixai29 in reply to jillylin

Hi Jill's lin

I know how you feel. Yes my husband has no thought for any one except himself I'm afraid. Lots of soft hugs. xx

Hallo welcome to posting you have done an excellent job so well done. Yes I love the people who can always cap your story so if you have hip pain there hip is literally falling out of its socket so I can really empathise with that as sometimes you just want a little sympathy and not a monologue of their ailments. He does sound very selfish but I think reading between the lines he is having trouble coping with his own illness and therefore selfishly is underestimating how yours is affecting you. My husband is ill but with anxiety and depression and I know I am very understanding of that most of the time but sometimes when I am in particular pain and he seems to be lounging in bed and I am trying to struggle to do something physical and in a lot of pain I have that thought going through my head "oh get up you lazy so and so if I can do it you can" and then I pinch myself and think well it is the nature of his depression and he isn't deliberately being awkward. I am not going for sainthood here as I often have to often remind myself to be more understanding.

I am just wondering whether as he has suggested you go on a course about Diabetes he thinks you don't understand his illness and are underestimating how it affects him.. I don't know if there is an Expert Patients programme in your local area that you could perhaps both go on but to separate event. Sometimes they are about a specific illness and sometimes they are more general for people who are dealing with any chronic illness but it teaches you different coping mechanisms and a chance to mix with other people with health problems and swop ideas. . There are sometimes ones for carers too as even though you are both ill yourselves that it what you are also for each other, so you both have a double burden to carry. In this way you are acknowledging that he is ill and has problems and are willing to learn more and his eyes might be opened to how other people are suffering with many diverse illnesses and it is not just him who has problems. You will also meet other people who are suffering and I know that often people make good understanding friends after attending which could be beneficial to you as you seem very much alone in this struggle.

If after this he just doesn't want to know and it is making your life hell then there are perhaps choices you have to make but fingers crossed that you can somehow work this out between you. I don't know if you have a close friend you can talk to as just speaking about the situation and having some ones sympathetic ear can help. I try to get out at least once a week to something enjoyable to give us both a little space and I think it helps both of us.

Do feel free to have a rant if you want to here as a lot of us have been there and worn the T shirt as they say. Let us know how you get on. Soft

Xaixai29 in reply to rosewine

Thank you rosewine for your reply. We both went on the patient programme you mention some years ago now. There were a lot of people there with diabetes so the subject was of course mainly diabetes. He didn't learn anything from it really I did learn how to say NO.

I am 71 now and finding things quite hard at times especially the acheing days when every part of the body hurts. I am on butrans patches,nortriptyline,Tylex,and tramadol when it is bad. I also get a creeping feeling in my legs as if there are creepy craw lies inside. It's horrible. Does any one else get this?

My husband has been abusive in the past so I just amble along on my own which is why I said I feel alone, as there is no sympathy from him.

I go out as much as I can but he accuses me of having affairs. I thank you for taking the time to read my post and the much needed hugs. Hugs returned. xx

Naylee in reply to Xaixai29

Hi Xaixai29, i do feel so sorry for you, you shouldn't be treated like that. It sounds like he is set in his ways so no point in trying to change him. But you should, like you say get out of the house and try to have some enjoyment. Its hard when everything hurts. I wish you some happiness xxx take care x

Xaixai29 in reply to Naylee

Thank you so much nay lee. You're quite right it's too late to change him I have given up trying. I just try and 'do my own thing' and get enjoyment when I can by going to a little club in the next village. Also used to be in the WI until it folded and became the ladies club but still attend. It makes a nice change to see other faces.

Take care lots of hugs. X

rosewine in reply to Xaixai29

I am so sorry it looks as though you have pursued all the avenues I suggested already and it looks as though you have had to put up with even more than his indifference to your illness you have my admiration for putting up with it all these yeas. He sounds very insecure and manipulative. I am glad that you manage to get out and have a bit of time to yourself and some respite from your life at home.

The days when everything is tender and hurts all over are so bad as sometimes you wonder whether you will get any respite from it. A lot of us get restless leg syndrome which can vary from us having to keep on moving our legs to cramping and strange sensations. Thinking back now I think that is how this first started with me with the strange sensations in my legs.

Keep your chin up, we are all on your side. You are not alone as you have us on this site, I know we can't be there with you physically but we are with you in thoughts. Try and have a good nights sleep.x

Hi I am having the same problem with my husband.He is retried and I have to work , will be 60 end of the month .Was told last week that I had fibro have had years of pain and have been going to the doctors on and of . He has not been very good as it is as I have had ibs for years .when it is bad I will be up all night ,l still go to work as l work for myself as a carer and have people that needs me . He did not go with me to the hospital ( that says it all really ). I was given a booklet explaining all about fibromyalgia ,gave it to my husband and asked him to read it . He did not even look at it .l have been in so much pain the last few days ,have been working. apart from care work l also do 3 hours housekeeping a day .l do not no how much longer l will be able to do this l am so tired legs.

Naylee in reply to hope60

I feel so bad for you, you work as a carer but seems your partner isnt caring for you. And I know how hard cleaning can be when you are in pain. Please take care of yourself x big gentle hugs xx

Xaixai29 in reply to hope60

I also have ibs and the pain is excruciating. Thankfully it doesn't happen too often. I have to care for my husband when he has hypo's and have to inject him to bring him round but there isn't any thanks. So I know what caring is like as I also cared for my mother and father at the same time. Dad in a wheelchair and mum had emphysema. My heart goes out to you. Xx

Hi, my partner did a weekend of digging holes for fencing, by the Monday he was aching all over and struggling to get upstairs. He stopped and looked at me and said is this how you feel everyday? I don't know how you do it. It was like a light bulb moment. If only you could have your partner feel what its like for you for a day!! I wish you some more sympathy in the future x take care of yourself xx

Xaixai29 in reply to Naylee

SOO pleased for you he saw the light at last. Hug hug. X

Hi Xaixai

I am so very sorry to read of your situation and I genuinely hope from my heart and soul that you can find some resolution and relief to your issues. As a man, I have experienced this kind of selfish and arrogant behaviour from my elders whilst growing up, and I have undertaken everything in my power to ensure that I never, ever behave in this way.

I look after my wife who suffers with MS, and I would turn the world upside down if it would help her to feel better about herself, and I would never take for granted what she suffers and feels emotionally as a result of her illness, so not all men are the same (but sadly most are!).

I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken x

Xaixai29 in reply to TheAuthor

You sound a great person and a wonderful carer. It's nice to know that not all men are the same and there are some really genuine people out there. Thank you so much for your kind words and thoughts.

Xaixai. ( Pronounced shy shy.)xx

I know I am blessed, I am carer to my husband we have been together since our teens and now as we are both unwell he says that we make one good one between us, I can only sympathise with anyone with no support, I have no idea how it feels. xxx

rosewine in reply to lou60

That's funny as my husband and I met when we were still at school and that is more or less what we say but on bad days we say "we don't even make a good one between us"!

Thank you all for your kind words .So sorry for having a moan. Feeling really bad as l am not the only one in pain . Their is a lot of you out there that are feeling far worse than me . Please take care and thank you again .

Xaixai29 and Pissingmeof:

I have a friend who is worse than I with fibro and many other problems. Daily she has to look after 6 horses 5 dogs and a few cats. While mucking out stables and keeping the house she mind her daughters two kids while the daughter is at work.

Then her husband degrades her because she is in pain or worn out,,, " it's all in your head ",,,, Oh god how I wanted to send him flying head first into that big pile of dung his wife built.

I quietly suggested she flavour his tea with arsenic. Now ladies while I am unable to ply you with the aforesaid substance and I would rather chew of my nipples than speak out of turn,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,, wait for it,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,

But,,,,,,,,,,,,,,,,,,,,,, it appears both your husbands are very comfortable and set in their ways.

This is probably a situation that you allowed to form over the years,,, I am not being blame-full, only trying to get you to recognise a possibility.

It is only when you recognise a problem you can start to deal with it.

Would the mention of divorce,,, rock their world enough to perhaps make them buy you a box of cheap chocolates and listen to how you are.

My dad loved mum dearly,,, did he ever buy her flowers,,,, No!

Did he buy her chocolates,,, perhaps at Christmas!!

Did he kiss her and tell her he loved her,,, No, not to m knowledge.

When she died,, he wept

He then started buying her flowers all the time and kissed the headstone tenderly with tears in his eyes.

Sometimes people just need a good kick up the @%$£ to bring a bit of pause into their lives!

Now for those of you that are getting to know my quirk little ways can you imagine the look on my face when he was kissing that really cold headstone.

The funny thing is we were all a very functional and loving family.

My Best to you all, Ray

Xaixai29 in reply to RayB

The divorce word has already been mentioned. It got so bad recently that I was on the verge of a breakdown so I left for two weeks and stayed with my brother. I just had to get away. It probably is through me waiting on him hand and foot and never saying NO. He is abusive mentally financially and although not physically he did threaten to punch me once but that was once too often I went to the police. Since then there has been no physical threats. I walk on egg shells daily though. I am soo pleased that I joined this site as there are so many lovely people here and at least I can get stuff off my chest. Thanks to you Ray.


RayB in reply to Xaixai29

Xaixai, Living with the stress of walking on egg shells is very detrimental to your health, I am very aware of just how stress strongly effects my pain levels.

It is thought living with constant stress is often the reason for the start of Fibro, it certainly was for me.

You are is a very difficult situation and my heart goes out to you love.

You were brave enough to report his behaviour to the police, many would have been afraid, you know that was the right decision.

I often think people are together because they are afraid of being alone,,, and we all resist change.

You must make your own decisions, when you weigh things up,,, sometimes it helps to write a list of positives and negatives.

I once asked a friend: "If your car gave you as much trouble as that relationship what would you do?"

We can only be a sounding wall,,and put our tuppence worth in,,, which may or may not help,,, but we are here!

My thoughts are with you, Ray

Hi I am so sorry ,to hear that you are being treated like this , we get posts like this regularly ,I used to feel sorry for myself as I am know alone after 25 years of marriage and 3 children ,I like you had a husband like yours and he had other medical issues but his were all self inflicted in his youth ,he still is a practicing nurse ,but one of the most uncaring people you could possible care to meet ,behind closed doors ,we were to the outside world the perfect little family but like everybody we had our own issues and of course when I took my eye off the ball ,and stoped to take care of my dying father ,he got jealous ,I divorced him 7 years ago and I am know so pleased I have done this ,my illness came on 4 years ago ,and if I had to deal with him as well I don't think I could of coped ,you need to look after you ,he is big enough to look after himself ,you are not alone we are here for you this is a lovely group there are a lot of very kind people here ,we can listen and chat and help you smile and when you have been here a while laugh as well :d don't do anything your not happy about, be careful , think hard about how you want to live ,be calm get advise , talk to your doctor ,stress will make you worse and you don't need it , be kind to you ,I now live with my two dogs I am 52 ,my children are spread to the wind the to younger ones contacts me every day even from Japan , to make sure I am ok ,if you decide you can't cope at home and he is making things unbearable there are people you can go to for help ,take care ,thinking of you shadow xx

It's like you're talking about my husband, except he did read the info & we researched it on the net together. Now he thinks he knows what i should do to be cured. he doesn't get it that it is not curable & we only learn to manage it & live with it. I still do everything in the home as normal, with no help at all. The thing is we try & carry on. Thank God for this site so we can offload & not be put down. Try & not let it get to you & pace yourself. We have lots of friends & support here. I don't think I'm wrong in saying that you're welcome to come & offload whenever you need to. Gentle hugs. xx

This makes me very sad :( Your husband should be the one there by your side, your best friend, supporting you through this. If anyone should understand 100% what you are going through, it is him.

I can't speak for you or him, but even if it was a friend, i'd have read all the information they gave me in a bid to understand and help them through. The only reason I wouldn't do that, would be if I simply didn't care about the person.

If my boyfriend didn't bother reading the information that I sent him about my conditions, that would have signaled to me that he simply didn't care about me - in which case, there would be no point in being with him! Having a boyfriend is different to a husband, but having previously been married, for me that would be even worse as he took vows to support you and be there through it all!

If your husband is not supportive then in my opinion, he is selfish and does not care, so I think there are some bigger, even more serious issues to deal with here.

Playing devils advocate fora moment (but not defending him in the slightest!), I do have some friends. He admits to finding his partners new fibro diagnosis hard as she has always been a lazy person; he has no way of knowing when she is genuinely in pain and suffering or when she is just being her usual lazy self! Regardless, he is still supportive, because he loves her.

I've not had time to read all of the previous responses, but I do hope you tackle him about this. xx

Xaixai29 in reply to ShellyWelly

Thanks shellywelly. This last week I've been ill with an especially bad cold and / chest infection,and been in bed most of the time, has he asked if I would like a cup of tea? You've probably guessed right,no he hasn't. So yes I know he doesn't care. I'm always there when he has a hypo(diabetic) and cope with injecting him to bring him back to the world of the living but when I'm in need its a different story. I thank everyone for their comments and soft hugs. They are returned gently. xx

ShellyWelly in reply to Xaixai29

I'm so sorry to hear that, it must make a bad situation even worse for you :(

Where do you live? If you're local i'll come round and make you a cuppa, i'd bring cupcakes too...just can't promise I wouldn't be tempted to empty the rest of the kettle over your husbands head for being so mean!!

*hugs* I hope you are feeling better soon xxx

Xaixai29 in reply to ShellyWelly

Thanks. Shelly Welly. Not a lot I can do about "him" apart from helping you lift the kettle. Have to grin and bear it.

Your not on your own there I have a wife who does exactly the same even to the extent of getting muscle rub to help and no matter how much I say it does nothing she tends to buy a different names of heat remedy lol not funny but I just decide not to say to much just read this sight to find others in the same boat sorry hav`nt got the answer but I do feel for you xx

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